Friday, June 15, 2007

Intravenous Iron Infusions

My doctor is suggesting that I have Intravenous Iron Infusions done, she is setting me up an appointment with a hematologist/oncologist. She says that this procedure will build up my iron storage levels and help me from bottoming out so quick. She also promises me that it will make feel much better. But I haven't been able to find out much about it and I would love to hear from any of you that has had this done.

67 comments:

Meesh said...

Funny you should mention this, my doctor mentioned this last appointment for me too, and don't know much about it.

Let's put our heads together on this one!

Lea Ray said...

I am actually looking forward to it, I'm just nervous about side affects. We know how one little pill can affect us. What happens when you have a bottle of it injected into it. The few things that I have found have been positive.

I did have a link sent to me for www.drugs.com and then search "Iron Dextran". It doesn't sound too bad. I hope my appointment is soon. I should be hearing tomorrow.

I will let you know if I find out anything more. We can experiment this together.

Lynn Barry said...

Good luck with this. I hope it does all that you want it to do and has you on the road of being as healthy as you can be.
HUGS

Let Them (not) Eat Cake said...

Iron dextran allows you to replace the amount of iron you are deficient in one sitting. I personally (and professionally) think that sounds way better than taking ferrous sulfate tablets 3 times a day for six months when you probably can't absorb it anyway...

The doctor will administer a "test dose" of iron dextran first and watch you for awhile to make sure that you don't have a reaction to the medication. The infusion can take awhile, depending on how much they are infusing.

Let me know if you have any questions about side effects. As a person in the healthcare/drug arena, I can usually find information more easily than most and would be glad to help in any way I can!

Lea Ray said...

Let Them (not) eat cake- Thank you so much for your response. I really appreciate it.

angelnina said...

I just found your site while searching for info on intravenous (IV) iron infusions. Did you have it done? I'm so curious as to whether it works well or not. I've struggled with low ferritin for years.

Ceci said...

I was feeling terrible for a while. My ferritin is 3! (h/h 9.1/29) I have been gluten free for 2+ years for suspected Celiac disease. I was tested for the genetic component last summer and it was positive. My diet has been so restricted so I doubt I get enough or any iron and who knows what gets absorbed. Tomorrow I am going through an endoscopy (about time) and a colonoscopy to make sure I don't have GI bleeding. In the past I have tried to take oral supplements, including iron 2 weeks ago when I found out about my level. I wasn't able to tolerate it at all. I'm very concerned how I will be able to increase my iron quickly enough. I really don't want to wait 6 months or more to feel better again. I am an athlete and have been struggling to keep up with my workouts. I'm wondering if I suggest iron infusions the doc will agree? Any other suggestions?

Anonymous said...

Hi All

I had very low ferritin and had an iron infusion 12 months ago. It was the best thing I have ever done. I felt better within a month, had no more depression and got my old self back. My ferritin is low again and I am going for another infusion next week and I cant wait - don't be scared, it is worth it

Tina

River Rat said...

I have to have this treatment & also don't know anything about it. I googled it & now I'm kinda scared. The message boards are full of people talking about how awful it is. YIKES! The pills were pretty bad, though. 1 dose (which didn't even stay down) left me recovering for 2 days. But my anemia gets so bad I actually have to have blood transfusions. Somebody please tell me it'll be OK!

ReminderConnection said...

Three months ago, my wife was diagnosed with Celiac Sprue. Needless to say, this long overdue diagnosis (12yrs) finally provided the missing link to many chronic symptoms, including severe iron-deficiency anemia, which countless inept physicians either failed to address or chose to ignore, commonly attributing her "severe" and chronic anemia to her normal menstrual cycles, usually with a single swift stroke of their magic diagnostic wands!

Sorry to digress...

Once her Celiac related malabsorbtion condition was diagnosed by our thoughtful and tenacious Nurse Practitioner, IV Iron Therapy was prescribed to help my wife on the road to recovery from years of iron-deficiency. However, due to critical mistakes made by the hospital pharmacy and the nurse on duty in the infusion lab, my wife nearly lost her life.

Iron with Dextran base was prescribed, which is the only iron-base formula that requires a test dose on 1st exposure due to the risk of anaphylactic shock and systemic failure.

The test dose was supposed to be 25mg DILUTED in 50-100 mL of NS and infused (DRIPPED) over 15-20 minutes. The test dose given my wife was NOT diluted and was injected directly into my wife's IV site, and therefore directly into the bloodstream. In the meantime, the remaining full dose in raw, undiluted form was being drawn up for injection into IV site. All contrary to my understanding of the intended prescription!

I told the nurses to STOP, DO NOT to administer anything else until I made confirmations, then I was immediately on the phone to doctor’s office.

Within seconds of receiving the test dose my wife began to experience an escalation of frightening symptoms: First, an immediate sharp pin-prick itching all over her body, then fierce abdominal cramps, followed by a severe tightening of her chest with respiratory distress, before she finally went unconscious. All this transpired within just a few minutes of injection, all without the recommended anaphylaxis management kit on hand in the infusion lab. My wife was rushed to the ER, where she thankfully regained consciousness and was further stabilized.

Two weeks later, we tried again, this time changing the iron formula to a “gluconate-base” (Brand name: Ferrlecit). This second dose was diluted and infused over 5 hours/day for 8 days WITHOUT incident.

PLEASE, remember that credentials are NOT licenses for omniscience. DO NOT take your doctor or hospital or pharmacy at face value. Please require them to check and double check the prescription and its administration. PLEASE DO NOT be intimated by your doctors and nurses, ASK QUESTIONS until you are comfortable and satisfied with the answers and DO NOT allow your practitioner to EVER dismiss your concerns.

Anonymous said...

I am scheduled to begin iron iv and aranesp but I cannot find any info on what to expect as a heart patient with chronic kidney disease I would appreciate knowing
what will be happening

miss carol g said...

Thank goodness I was referred to see a hematologist which performs this procedure. I have had 5 iron infusions and will still be getting 3 more. The first two weeks the procedure was done twice weekly. I noticed my strength and color coming back in just two weeks. A recheck will be done in two months. It made me feel so very much better and was worth every dollar! The doctors were very careful to take care that my body would accept it without an allergic reaction. Each infusion ranged from 2 - 2 1/2 hours long. I encourage you to have it done if you want to feel better quickly.

Jeanne said...

Hello, I came across your site while looking for some additional information on IV iron infusions. I had my first infusion yesterday -- quite a long day! But I am hopeful this will do the trick for me. I was sent for infusions by my hematologist (who my gastro referred me to - I am a celiac who also has ulcerative colitis). They first gave me some Tylenol (not entirely sure why..? to counter potential pain, maybe?) and started a saline drip, then a bag of benadryl & a "test" bag of iron (I don't remember the order I got those in, actually). I had no adverse reaction to the test bag, so I got the big-monster bag of iron (2-1/2 hour "drip time"). I didn't have any complications at all. My ferritin level was 3 when I went in (apparently a "normal" level for women is somewhere around 50). If your insurance covers it, it seems the best way to get iron quickly. I didn't feel anything like I do after taking iron tablets orally. I will continue going once a week for 5 more weeks and hope to be back to "normal" again soon! My best wishes to all who are seeking info on this. Hope you all will be feeling well soon!!

Jeanne

Mary Kedz said...

Jeanne,

I just read your post from 7/17 and wondered how you feel now, after your infusion(s). I am scheduled for the same thing tomorrow and was curious about your results.

Anonymous said...

I have leukemia as well as IBD from Crohns disase. I take an oral form of chemo everydsy. I have been diagnosed with bleeding within the ilium. End result is constant fatigue, anemia, depression, etc. I have started a series of 5 iron infusions over a 5 week perios. It seems rather tollerable. Occasionally after a dose I get pain in literally every muscle above the waiste. Usually this lasts several days. Wondering if anyone else has experienced this kind of pain following an infusion. The staff in the chemo lab that administers the infusion claims to never seen or heard of this as reaction to the infusion. The pain is so intense that I literally can't get out of the bed without severe pain.

Again I's appreciate hearing from anyone with similar symptoms.

Thanks, Tom F.

Anonymous said...

Tom..

I have just finished my second iron infusion yesterday.. While I did not experience the arthralgia that you have my oncologist at Mayo Clinic Scottsdale was sure to mention that this is a common reaction.. They can give you a Short Acting Opioid like Roxicodone, Vicodin, Lortab, or even a muscle relaxant to help with the pain.

I have Cealiac and was diagnosed one year ago and have had a Ferritin on 3 for the last 10 years.

Also make sure that they give you the tylenol before the infusion...

Hope that this helps...

Mac

Anonymous said...

Just found this blog. I have had low iron levels for the past three or four years. Taking an iron supplement was not working since I was not absorbing it as I should. I have had problems with a stomach ucler in the past and was told that my ability to absorb iron has been compromised by high level of acids that I had left untreated for several years. I just had my second IV infusion treatment today. I could tell a huge difference about my first treatment within a week to ten days. I felt significantly better and that lasted for about three months and subsequently went back to my oncologist who was able to schedule my second treatment. If you are being treated for anemia and are not feeling better after taking oral supplements please ask your doctor about Intravenous infusion. It has made a huge difference in my quality of life.

Laura said...

I am so glad to have found these comments. I have had a low ferritin for over 3 years, am hypothyroid and gluten intolerant. I have an appt. with a hematologist/internist on Tuesday and am going to ask for the iv infusion. I am tired of being tired and want to see if my quality of life can improve. I also have severe restless legs syndrome and want to see if it goes away with this. Are there any other websites you can recommend so that I will know what kind of results to expect???

Anonymous said...

The infusion was fine and was 2 hours long. When I got up from the chair I felt stiffness is some joints. Then a burning sensation occurred. But then the violent reaction began... extreme cramping, then diarrea, more cramping, more diarrea, then vomiting. I felt like I had been poisoned. I may have been overdosed. My doctor was suprised to hear of the negative reaction!! So beware.

Anonymous said...

Thanks to everyone for commenting on this site. I have found everything very informative. I meet with a hematologist on the 31st. My doctor and i have been struggling getting my iron level up above 11. Got it to a 13. Last month it dropped down to a 3. Iron infusions are in my future. i am always tired, cold, sever leg cramps at night, and depressed. Hoping Iron will take care of some of this. Best wishes to all.

Anonymous said...

I am so glad I found this site. I was recently diagnosed with Iron deficiency anemia. We, the doctor and I, are trying oral iron, folic acid & vitamin c for now. If that doesn't do the trick then I, too, am looking at intravenous iron infusions. I'm not much on needles and as silly as this may sound, I really don't have the time to take 3+ hours off from work to do the IV thing. But, if the doctor says I have to then I will do so as I'm tired of being tired all the time. I thought it was all due to my under active thyroid until I got sick after Christmas. I'm not so nervous now after reading the posts on here.

Anonymous said...

I attempted to have an iron infusion yesterday. I got about 1/3 of the way through and my arm started hurting (not burning but hurting a lot) at the IV site. Then I started to feel sick to the stomach and about to pass out. The Dr. had to stop the procedure. The Dr. said my reaction was unusual in that most people don’t have a problem. Good luck, hope it works for you.

Anonymous said...

I have recieved iron interveinously once a week. I have never had any negative effects from it. I feel more energized than i have in years and would recommend it to anyone

Anonymous said...

I had my first of two IV iron infusions yesterday morning and came across this blog when searching for possible side effects... I am having flu like symptoms with strong muscular aching and 38°C fever... I've read here about someone having muscular pain... what about the fever? Is this normal or am I really having a flu?
Thank you for your help.

Anonymous said...

Hi i have had 3 iron iv infusions and i have had sore head and felling sick they have had 2 stop my the last 2 times, they say there is no sore joints and that but there is bec i have had sore legs , and i am having another 5 more infusions not looking forward 2 it .......

Anonymous said...

I have had 7 of the 8 prescribed by the hematologist. It has been effective. Much more energy. Not sure which Iron supplement though. Although I have fibroid tumors so I bled out some of the Iron from the first 4 treatments. Last night I started having some discomfort in my upper GI tract. This morning I am a bit dizzy and I feel ulcer like pain in my upper GI. I was very concerned until finally I remembered the nurse asking how my stomach was tolerating the treatment. Bingo! I've been searching the web to see if there is an over the counter medicine that helps with this side effect. (Saturday, Dr's office is closed wouldn't you know.) Found many description of the side effect but no recommendations for relief. Stumbled across this blog. Any suggestions?

mia said...

i am supposed to be having an intravenous iron drip soon i am waiting for the appointment. i have been told that it will hurt. im very scared of needles and a wimp when it come to pain. anyone with information on what it will be like?

Lissia said...

I have suffered from chronic anemia all my life. And I have just found that I have no iron stores in my bone marrow. I'm scheduled to have my 1st transfusion next week sometime,and am nervous. I have read all the comments and found them to be very helpful but wonder if anyone could point me in the direction the read more about it. My hematologist told me I would be there for 5 hours each time I go, but that was all. I would just like to know more.

Anonymous said...

I just had my first iron transfusion today with zero side effects. I have a hx of low ferritin (6) with no anemia. (I've been gluten-free for years, but do a challenge once in a while.) Some iron (not sure which one, but it's less expensive, can cause anaphylactic shock). While everyone is different and has his/her own sensitivities, iron GLUCOSE is the gold standard. I'm scheduled to have 4 more infusions, then take a ferritin level to see how to proceed. I've had years of severe brain fog, blood pressure issues, gut issues, fatigue, etc. I'm hopeful this will help.

Anonymous said...

I just finished 3 iron infusions in the past 3 weeks - once per week. It took 1 1/2 hours each and wasn't too bad. I'm not a fan of needles but once the IV is in, then it is okay. I've had pretty bad nausea and have lost 10 pounds in the past 2 weeks but I have had more energy than I've had in a few years. My iron numbers were at 8.4 with the ferretin at .5. I'm having more blood work done tomorrow to see how the numbers look. Hopefully my body accepts the iron infusions. I would say to anyone to go ahead and try the IV iron - it is working for me. Good luck!

Anonymous said...

I had my second of five treatments yesterday. I have had a partial gastrectomy and cannot absorb oral iron. I have been so tired I would have tried anything. The infusion's have hurt a bit, but they use really small needles and I have bad veins, so I don't know if others have had this. Kind of a spasm with an ache that lingers a bit. 18 hours after the first I woke up with horrible joint aches, nausea and vomiting. Yuck! The second time, it was closer to 24 hours before the symptoms came. However, if this gives me more energy and I start feeling better, bring it on. I have 3 more scheduled and then labs to see where I am at. Initial ferritin was 6. My hematologist thinks I will need it every three months or so to keep my levels up.

anita said...

I had my IV Detrol infusion a few days ago. My ferrin level was an 11. I didn't have any reaction to the test drip and things went very smoothly during the actual infusion over 6 hours. They took my BP every 15 minutes and monitored my heartrate. The next day I still didn't feel a lot better but I do feel more energetic than I have over the past few months. It used to take superhuman effort just to walk up and down the stairs or play with my daughter. Yesterday I raced her to the car - and won! I feel like I'm getting my old self back and maybe, just maybe this will be the beginning.

Anonymous said...

Breakfast at 7am, then to the doc. This morning my hematologist said yes, iron infusion today. In the nice comfy recliner an hour later. First two Tylenol, then a while later Benadryl. Benadryl made me very sleepy but then it brought on restless legs (ARGHHHHHHH) and the nurse went to get Ativan but before she could get someone to say okay, the restless legs went away. Then I had to pee. She took me and all the apparatus to the potty. Then she gave me the test dose of Iron. We waited an hour. All okay. Had to pee again. Dozing. Chilly. Got some warm blankets. Better. Then the whole bag of espresso-looking stuff went into my veins. All done by 1:30 pm or so. Famished. McDonalds (shame on me). Home. Sleepy. Now it's 5:30. No bad side effects yet. Took Requip for restless legs for the night ... nothing unusual there.

Anonymous said...

I am scheduled for an iron infusion tomorrow and I am not sure to be afraid or not. My ferritin level is 1 and I have probably suffered from severe anemia for a while but I just thought it was me. I was relieved there was a reason for my exhaustion and various other problems like shortness of breath, heart palpitation, can't concentrate or think. But I am concerned about taking this now since I never even thought about side effects! I am also so ready to feel better. I just found out about my severe anemia a week ago. So everything is new to me.

Theresa Layton said...

Hi everyone. I wish I had found this blog before today. I have been suffering from low iron/ anemia for about 10 months. Because I do have a family history of lymphoma (dad died of it) they first tested me for that, and did a PET Scan w/ Contrast. That came back fine, so then they did an endoscopy and colonoscopy- which also came back fine. Believe me, I was relieved to find out that I didn't have cancer or internal bleeding, but am tired of being tired. My hematology oncololgist that is treating me strongly suggested the iron infusions. I did my first one today- an Iron Dextrose combination that was 250 ML and took over 4 hours to drip. when I got down to the last 23 ml., my feet got hot, tingling and swollen, then by the time I could get the nurses attention, I went into full blown anaphylactic shock. I was terrified and my heart rate dropped to 50 over 30, they were preparing a crash cart in front of my eyes. I was extremely hot, sweating profusely, and felt like I couldn't breathe. No one told me about this risk going into this. The nurse of course stopped the iron, and after I was stabilized they all stood around saying "gee, I wonder why your body is rejecting iron"... I'm very upset. If this is the "last" resort to treat my anemia, and I can't tolerate it- what should I do? No one seems to have any idea what my real diagnosis is. My symptoms are night sweats, itching all over my body, pain in joints and swelling of hands and feet on a fairly regular basis. I'm interested in any and all comments....Frustrated in Maryland.

Anonymous said...

Good morning, I am scheduled for my first iron iv infusion this morning. I have to do one of four once a week for the next four week. my iron saturation level is 3 and I have iron deficiency anemia. I am also taking Savella for Fibromyalgia which I just started last week. Is anyone else a hard draw like I am? I am very nervous about this afternoon its in 4 hrs. Trying to stay positive but its not easy. I hate needles. Well wish me luck and I will post tomorrow what happens. Thanks. Take care.

Anonymous said...

I have a type of anemia where I have low white blood cells, hemoglobin, iron levels, everything... it's all been wiped out. I do not have cancer but I have the blood work-up of a chemo patient. After 5 years of taking oral medicines which have never been absorbed by my body I am scheduled for iron infusions. I'm concerned (& scared) about the side effects of the iv, however, I can't continue feeling the way I do, I'm only 30. I read one of the posts about how someone felt so much better they actually raced their child to the car and won and I cried. I have dreamed of feeling better again for so long! The risks outweigh the suffering I am going through now.

Also, Theresa Layton... have you had your liver checked out? If not, I would recommend asking for the liver levels to be checked.

Anonymous said...

Had mine on the 14th, expecting to be feeling better immediately after. What I got was totally unexpected. Started passing out about 1/2 way through the bag. BP dropped, confusion and weakness set in. On the trip home, I passed out several times. The real fun started that evening. Horrible pain in my mid to lower back followed by a feeling of a truck being parked on my chest. It's been about 3 days since then and I'm starting to get better, but it's uphill the whole way. If it moves my count from 7, I guess it'll be worth it. Doc says that this is rare, but I have seen other posts like this out there.

Anonymous said...

Hello I am reading this because I am scheduled for an infusion on tomorrow morning. I am very nervous and I am afraid of needles. I am terrified at the thought of having a needle in my arm for 5-7 hours. I am also worried about any side effects that may occur. Also I do not want this to be something that I have to do on a continuos basis. Is there anyone out there that only had to do this once and everything was ok after that? please help!

judith said...

to anonymous - aug 4th posting

Have they done a bone marrow? There is a very rare strain of leukemia called Natural Killer Cell or NK Cell - it is chronic and you can live for years and years but hard to diagonose - first two hemotoligist missed it - it is was discovered at the cleveland clinic.....my symptoms were same as yours - all levels low - my nk cells were killing off my own red blood cells....

Anonymous said...

Hello everyone. I just had iron replaced intravenously today. I was nervous about it to. My doctor told me I would feel flu like symptoms and she gave me 1000mg of tylenol for muscle pain and some benadryl for possible allergic reaction. Well, I did feel nausea, muscle pain and a slight headache. I was also very tired. My husband drove me home. Slept for the rest of the day.

Anonymous said...

Hello,

I did some reading online when I was told that I would need to have IV iron, both in forums like this (Thanks Lea!), and assorted medical information (mainly study info on PubMed).

One thing that I think a lot of patients are missing info on, is that all IV iron is not the same. The most common version in the US is iron dextran (most common brand "InFed"), which also has the highest rate/level of side effects.

A less common version is sodium ferric gluconate ("Ferrlecit"), which has less side effects, but isn't often used, and has less data available than any other. Approved in the US in 1999.

Another version is iron sucrose ("Venofer"), which has been used in Europe for decades, and has been approved in the US since 2000.

It has a very good safety profile, a low risk of side effects, and can even be given to people who have had reactions to iron dextran.

There is, of course, a drawback - it is nearly twice the cost of iron dextran. :(

So, many insurance companies won't cover it for anemia, unless you've already had a significant reaction to iron dextran. And paying for it out-of-pocket would be quite expensive.

The company does have a "Patient Assistance Program" however, which will provide it for free, if you don't have insurance, and don't make enough to pay for it yourself.

I've just had my third dose, and wanted to post both the above info, and also some reassurance for those who find this in the future - to remind them that what you read online will always been slanted toward the negative, that most people don't take the time/trouble to write to say that things are fine, they only write about their problems. So you will always read more scary things than good things, but that's not a reason to fear this...

With the Venofer, I've had zero side effects, absolutely none! Sure, I've come home tired, but I come home tired from every errand, even the grocery store - that's anemia. And it will take time for that to feel better - I think I remember reading somewhere that it takes about a week to build a new blood cell, and something like a month before enough of the new ones get into your system, for you to really start feeling better.

I would highly recommend the Venofer if you can get it - if you can't, I would still say that doing the iron dextran is worth it. Your alternatives (assuming that you don't absorb enough orally) are to feel awful forever, or get blood transfusions - and those carry their own risks...

Another suggestion from my reading of the medical info - there are two versions of the iron dextran, "InFed" and "DexFerrum" - between those two, Infed has the better safety profile.

Also, for *any* of the various IV irons, including Venofer, there is a clear link between dosage and side effects/adverse effects. The higher the dose given, the higher the risk of negative effects.

Yes, it can be much more convenient to get the amount you need in just a few doses (or even sometimes just one dose), but if you need a lot, and you're concerned about the chance of side effects/reactions, I'd suggest that you talk with your doctor - ask if you can get it in multiple smaller doses, and at a slower rate. Meaning that the IV runs/drips slower, and you sit there longer.

Oh, and for those who are bothered by needles - well, there's no getting around the needle, but it's no worse than what you've already done in getting blood drawn for the blood test that diagnosed the anemia, and I haven't had any sore spots after the Venofer IVs, as I often have with a blood draw - so for me it's been better.

Hope this all helps...

Best wishes!

Anonymous said...

Hello!
My iron lvel was at a 2. I did my first treatment on Friday the 16th and my second treatment on Monday the 19th. I have my 3rd treatment on the 23rd. Each time it took approximately 1 1/2 and it was very easy and i had no side effects. I am looking forward to some energy and some well being. I am hoping to feel some relief in the next few days. Does anyone know when i should start seeing some changes in energy?

Thx!
Sheila

Anonymous said...

After 2 useless years of ferrous sulphate, which did nothing, I had a CosmoFer iron infusionover seven hours. No problems but sadly, after several weeks I feel no better. Only problem is continual itching which I had with the ferrous sulphate and which is still driving me mad. If "let them (not) eat cake" can help with a cure I'd be grateful. The leaflet says it will cure itself "spontaneously" but doesn't say when

Diana said...

I am 30 weeks pregnant, and have been anemic most of my life. The dr's tried me on 65 mg tablets 3 times a day but they were making me so sick so I am supposed to have my first iron infusion on Friday. Has anyone else had them while pregnant? What are the risks to the baby? If something goes wrong and i end up in anaphylactic shock what damage will that do to the baby? I am worried, but also know they can't get my iron up any other way. Thanks

Leach Family said...

Just found out that my 3 yr old's Ferritin level is a 6. Dr wants him on 90mg's of Elemental Iron for the next 3 months. We can't afford the Iron over the counter, so not sure if I should push the IV Iron route? Any thoughts or suggestions would be great.

Rhonda said...

I have been getting iron intravenously for the last 4 years. I am unable to absorb iron through the stomach due to a bleeding ulcer years ago. After the first year I had a port put in because my veins couldnt hold up to the constant poking. After I have it put in I usually last about 6 months. With appointments 3 times a week for a total of 10 settings. This time I asked if I could get larger doses so I wouldnt have to go in so much. I only had to go twice, but each dose took 4 hrs. This is a lifetime thing for me but getting a port put in was the best thing I ever did. I have never had any side effects from the infusions, but have a lot when the ferritin level gets low. They monitor me closely so it never gets to the point where I am anemic or my hemogloben level drops. I wish I could say having this done really helps me feel better, but not having it done is not an option for me.

Anonymous said...

I have been getting iron intravenously for the last 4 years. I am unable to absorb iron through the stomach due to a bleeding ulcer years ago. After the first year I had a port put in because my veins couldnt hold up to the constant poking. After I have it put in I usually last about 6 months. With appointments 3 times a week for a total of 10 settings. This time I asked if I could get larger doses so I wouldnt have to go in so much. I only had to go twice, but each dose took 4 hrs. This is a lifetime thing for me but getting a port put in was the best thing I ever did. I have never had any side effects from the infusions, but have a lot when the ferritin level gets low. They monitor me closely so it never gets to the point where I am anemic or my hemogloben level drops. I wish I could say having this done really helps me feel better, but not having it done is not an option for me.

Tracy~ said...

I have been getting Venofer since Jan 2010. At my first appt. my hemotologist told me that he was suprised that I was sitting there in front of him- he had never seen levels as low as mine. (lab was unable to calculate) He said that if there had been anything wrong with my heart/lungs- I would have died from a heart attack or stroke! I was extremely upset- I had gastric bypass TO PREVENT dying from a heart attack/stroke! Long story short...gastric bypass is the cause for my anemia. I have been reading the posts on here. I feel so badly for those of you that have had adverse reactions from the infusion. Fortunately, I have not had any with my infusion. We are still trying to get my infusion frequency right.At first I received it weekly(12 weeks)-then the insurance would only approve 8 weeks intervals(terrible! DRagging- unable to walk up short flights of stairs-WEAK and most of all depressed!) then 6 wks-again- felt well for 2-3 weeks-then it was back all over again!Now I am at 4 weeks. hopefully I won't "bottom out" so badly. I have a 3 year old...so It is not easy. My quality of life is not very good. I also have a weird thing going on. When my iron is low (and I experience all the bad symptoms) my heart rate is LOW. (unusual, I know!) Low- I mean 30-40's. Pass out, etc- along with all the other symptoms. So, NO driving, etc. As I said- greatly effects my quality of life! My husband is in the Army-hardly ever home at his assignment now (Sunday's if we're lucky) and is about to deploy for 12 months! Deployment at any time, stinks! But feeling so unwell most of the time is scarey-and to be ALONE for 12 months ontop of it!It is going to be a LONG year.. The cardiologist is talking pacemaker now...

Has anyone had this happen??
Thanks for your time!

JOHN WALLACE said...

Does anyone know if the "Iron Dextran" IV treatment is gluten free?.

Anonymous said...

My 3 year old daughter has battled iron deficiency anemia for 2 years. After 9 months of 60mg iron orally a day, her numbers went from 11 to 13, and then down to 3%. She got her first dose of iv iron dextran last week and she was tired and pale following the infusion. Later that night she started with muscle aches, headache, slight fever, and personality changes (combative and down right rude/mean - not her usual self at all). This lasted for about a day and a half, then she was back to normal. We are in the process of testing for multiple autoimmune diseases (she has 3 high ana titers) so I hope these infusions will help the anemia. She has two more over the next 10 days. Dispite the mild side effects, I think it is worth it. Hopefully over time they will lessen (she will have these forever).

Anonymous said...

I had my fist iron infusion 3 days ago. After reading some of the side effects I was really nervous about going. I guess there are different kinds of iron infusions mine was a feraheme infusion. This required no test dose. the nurse put in the iv and then injected the iron all at once. Then I had to wait an hour to make sure everything was ok.I felt fine no side affects at all doctor said it would take a little time before I see a difference in my energy levels.I'm glad I went looking forward to feeling better.

Anonymous said...

hello all and I am happy to have this blog so I dont feel like some sort of freak - I suffer from pernicious anemia and iron deficency anemia and was just not feeling well for about a year but nothing too notable to think things were as serious and dangerous as it was - thankfully I got in a very serious car accident that led to my very detailed oriented nurse practicioner to realize I had some major issues - after three days in the hosptial they came up with my double anemia diagnoses - I had IV iron injections for 5 days in a row every other week when my treatment started and it was AWFUL - I started in Infed and had a very very severe reaction to it so they switched me to Ferrlicit which I tolerated much better. I know after 6 months am still on injections every other week but now its only one day and takes about 3 hours - the day of the injection I am basically a zombie and sleep away most of the day until I wake up sweating alot and in pain as if every joint in my body is on fire - so I have to take Lortab on a fairly regular basis - my levels are still not normal and they dip dangerously low despite my injections - the pain comes from the IV iron casuing your bone marrow to activate to create iron storage and that causes the joint pain - for me this pain is amazingly awful - having a sheet on my body hurts - the Lortab I am on is no longer combating the joint pain so I have to ask my Dr for stronger meds and it makes me feel like some sorta junkie - so my Iv injections coupled with weekly self injected B-12 have me feeling "better" but not great. I know this takes time and I know things could be worse but this will be an issue for the rest of my life and it gets me down to say the least - some of my co workers hate me now cause they think I am "faking" to get extra time off work even though my HR dept has me on Americans with Disabilites leave so I have two days a month to call off without getting in trouble - its great but sometimes two days isnt enough but I dont want to loose my job so I go into work on days that I just want to stay home highly medicated - this has not been a fun journey but again there are worse things in life to have -I wish you all the best in your fight against anemia

jcrowder said...

Looking for info about breastfeeding and IV iron. I had IV dextran today and before I arrived I asked about nursing and the infusion and they didn't mention that it would be a problem. Then I arrived and none of the pharmacists, docs or nurses could answer for sure. Anyhoo, still searching for an answer-pumping and dumping til further notice...
Went in @ 9:30am to the hematologist/oncologist. Told too anticipate a 6 hour appt. Seen promptly. Received very thorough form that was reviewed by nurse that covered informed consent- it mentioned ALL of the potential side effects folks mentioned. Put into a room with two reclining chairs. IV was started by a wonderfully experienced nurse. She gave me 1000mg of tyleneol by mouth, then 50mg of benadryl in a small IV bag, then received pepcid in a small IV bag (for stomach issues), followed by an IV push (straight from syringe into IV line) of methylprednisolone (prednisone) to help with reaction plus muscle aches and pains. All of these meds are administered to (hopefully) prevent some of the nasty side effects. Others have mentioned that dextran is the cheapest option, and pretty much all of these drugs are relatively inexpensive- so likely a cheaper option/cocktail of meds to go along with the dextran. Received my test dose of dextran- my blood pressure dropped significantly- but that could have been caused by benadryl. They stopped test dose to monitor the BP a couple more times and it didn't go any lower and I was never symptomatic, so they restarted. Waited for test dose to end, monitored vital signs 30 more minutes then began regular dosage. Most anaphylactic reactions happen immediately if they are going to happen, so likely I was in the safe zone at this point.
Got sleepy after benadryl. Started the big bag- which was run in over 4 hours. The pre-meds and test dose took almost 2 hours.
All patients are shown how to unplug their IVd and get to the bathroom- which I did quite a few times.
Towards the end of the day I started to get a little warm- but not sure if that's b/c it was warm there, pregnancy hormones (i gave birth 4 weeks ago), or iron. After the big dose, I got another dose of methylprednisone IV push. She unhooked and I packed up.
As I was coming home I got a raging headache. I hadn't had much to drink so not sure if that was the cause. Took more tylenol @ home and it helped. Then started drinking lots of water. Had one small bout of diarrhea- but that could have been chance or related to any of the meds. Nothing recurred yet and it's been 5 hours.
In hindsight, I should have brought more to drink and something to snack on. They had crackers and water! I was famished which ALSO could have attributed to the headache.
According to what I read, you can still have side effects for days, but I'm hoping the meds will help mitigate those over the coming days- and taking more tylenol.
I'd encourage you to ask your doctor about a good cocktail of meds to take- though as some have mentioned not all IV iron is created equally- so you won't have as many side effects with some as with others. Here's hoping that I don't have any major side effects in the coming days. Still looking for info on breastfeeding and IV dextran. Have a call into pediatrician, I'm stuck pumping and dumping and formula til then.
Hematologists office (besides, telling me to consult the pediatrician) said was it's classified as L2 on some pregnancy scale. They only have details for injections into a muscle- which indicates it takes up to 3 day to be absorbed and 3 weeks to be fully excreted. Safe would be pumping/dumping for 3 days. Safest would be 3 weeks. BUT that isn't necessarily the same for IV dosages- which they admit, but don't have an answer for. The half life for IV dosages is 6 hours with full excretion typically in 18 hours. Soo...hopefully I hear back from the pediatrician tomorrow and am not stuck pumping and dumping for 3 days. TMI for most of you BUT in case someone else is looking for this info...

VCloud said...

I'm so glad I found this blog on IV iron infusions. I have an appointment on Friday to see the hemotologist (sp?) and then after my visit I will receive the infusions. I went online and researched the side affects and they scared me to death. I have been a nervous wreck all evening. I have a phobia of vomiting and I read that is one of the side affects. I even considered not going to my appointment.

I still have not made up my mind if I'm going to take the infusions, I'll see after I speak with the hemotologist.

I do feel a little better after reading some of the comments here. I do not have a problem with gluten my anemia is caused from malabsorbtion due to bariatric surgery 6 years ago.

Anonymous said...

I just got my first (hopefully only) infusion of Infed. I too, was scared after reading the possible side effects. My total appointment lasted 8 hours. I was first given 50mg of benadryl, and 10mg of dexamethasone (steroid) by IV, and 1000mg tylenol by mouth. I would like to first preface the following with the fact that the nursing staff was absolutely amazing. I had never experienced such sincere compassion and maternal comfort from any healthcare professionals, ever. So the benadryl and dexamethasone took about 10 mins to infuse. The only side effect I had during the whole procedure was my forearm started to burn and itch a bit shortly after she ran the benadryl. She said to not worry, as my veins are not used to having something run into them. She added an extra bag of saline and wrapped my arm in a warm blanket and within about 30 seconds the burning/itching subsided. She warned me of the infamous "benadryl coma" my response was that benadryl doesn't really make me sleepy. Next thing I remember is being woken up for my test dose to confirm my name and DOB which was done each and every time anything was administered to me. I quickly fell back to sleep and was woken by the beeping of the IV pump to let them know the test dose was done. I then had to wait an hour to see if a had any adverse reactions. I again fell back asleep. She woke me again to confirm my info and start the large bag of what looked like blood. I was then given another warm blanket to keep warm, and a tuna sandwich and a coke. From then on it took 6 hrs. Because she was running extra saline I had to urinate about every hour, other than that it was a piece of cake. It's now 18 hours later and the only complaint I have is I had very minor pain in my right femur, I took 2 aleve and that knocked it out. I'm going to be 30 in november and I have never felt more alive. I'm breathing better, my balance and train of thought is better. I know people say it takes a while to notice the diff but I noticed immediately. The nurse even made mention that I had color in my face lol, which I have never had. I would recommend this to anyone who has any sort of severe anemia.

Anonymous said...

I too was diagnosed with pernicious anemia back in the 80's and in the last few years with with iron deficiency anemia. I recently saw a hematologist who told me I am as anemic as you can get. She mentioned possible infusions down the line. My primary doctor who I've had for many years checked my levels after a month and found no change so he recommended infusions. My first appt. is tomorrow and up until reading the posts here I figured it was not going to be too bad. Boy was I surprised and am now worried about possible side effects. I already feel like I'm a medical book with the anemias, diabetes, thyroid, epilepsy, asthma,chronic bronchitis, enmpyzema, and copd. I really don't need anything else/any complications. Like everyone I just want to feel alive. I'm gonna focus on the positive sides of treatment and hope for the best, Thanks all for the information you have provided.

xyz said...

My iron level came to 33. n d doctor has suggested 3 doses of IV iron infusion, over a period of 1 week. I dose has been taken. Are 2 more required?? Is der any other alternative??
If nebdy has ne idea.....

Anonymous said...

Hi, I had an iron infusion yesterday. I'm not anaemic but have had gut problems, depression and chronic fatigue for some years. I've had many tests and attempts to find the causes and none have been successful. One thing that is persistent is that my iron levels are low and don't move up with oral iron.

Yesterday, I had 4 hours on the iron drip and no side effects. It takes 2-3 weeks for the iron to go in to the ferritin stores (and then actually make me feel better). I am told if it works it lasts a 'few years' and then you can have it done again if needed.

In preparation for the infusion - I was told to take 3 types of anti-histamines and a day before and for 3 days after, then they give some type of drug in the iron infusion to help the body accept the iron.

I think if you are sensitive to any types of drugs it pays to check if any reactions are to the iron or to the other drugs they administer at the time.

I've written on this blog because I've just spent a good hour trying to find some good info on iron infusions and I can't find it!

Roxanne said...

For Tracy:
I had a gastric bypass in 1999, have both an iron and a B-12 deficiency. I get my B-12 shot every month and take iron tablets. two surgical procedures, I had blood transfusions,my HGB was 6. T January 2010,i had surgery,and felt horribly tired.my doc told me I needed a transfusion,another said no and sent me home.i went back for a recheck,the nurse practioner was looking at my labs for the past 6 months and saw my HCB counts fell from 12 to 7. I went to a hematologist,he did a complete panel on me.I was exhausted I could sleep night& day. craved spinach,crunched on ice,short of breath,depressed, my memory was foggy, restless legs, sores in my mouth, night sweats, horrible cramps in muscles & the worst bone pain.hard to walk up steps.afraid to drive because I was sleepy,rapid heartbeat, cold hands and feet. I got my ferritin level back, it was barely a 4, my B-12 was 200,& my red blood cells were small! No internal bleeding,had a hysterectomy in 2001.my hematologist started me on Venefer infusions once a week for 6 weeks & B-12 injections every two weeks for 2 months, then down to once a month.my HGB hit above a 12,I got the Venefer about once a month for 2-3 months.I came to clinic for B-12 shots every month. We checked my HGB every week & it rose from 6 to 12& stayed there.the B-12 shots went to 1 every 2 months or so.I had to have a Port-a-cath put in,my veins were too small&couldn't handle the Iron.One month after I started the Venefer, I had a port put in. It failed & had to be replaced twice now. My hematologist wanted to stop teatment as he felt I may be stable,in April 2011, I received my last Venefer infusion (port #2 had to be replaced in May)and my last B-12 shot was in June 2011.In the meantime,in March 2010, my husband deployed again for a year this time.I was tired juggling the upkeep of the house, a teen and depression on top of feeling horrible!I know how you feel!He came home in February 2011, slowly over time the symptoms are back again.I told my doctor that I didn't want to wait until I was sick again. He told me my ferritin has been holding at 23 for several months (after dropping down from a 90),but he wanted to check my labs again.Monday this week, my B-12 is back down to 200, my Ferritin is at 7, my HGB is at 11. he is very puzzled as to why there has been a steady drop in my numbers. Monday I got loaded up on Venefer, and a B-12 shot. My next B-12 will be in 7 days and two weeks from Monday I will be back in for Venefer.he will check again in one month to see if the Ferritin is starting to come back up.Side effects? Heck ya! The worst is the first couple of days. Headaches, severe muscle cramps, bone pain in my legs and hips, restless legs, and the worst abdominal on the upper right side and right mid-back pain ever.Today is day 3 post Venefer, and if I STILL feel bad, i will be going back to the Nurse practioner.all of the side effects are going to be worth feeling better again. what other choice do I have.one day the doctor will find out why my bone marrow can't keep up with the production of healthy red cells, and iron storage, until then, it is what it is as my son tells me. I hope things are better for you as well. take care!

Anonymous said...

I have low ferritin counts for no apparent reason--tried oral supplements with no help. I have had about 6 infusions of ventrix, with some discomfort, which was ameliorated with dilution and longer times and also warm packs and benedryl. I have these due to restless leg syndeome. which is aggrevayed by the infusion. All in all, I am thankfuk to have them/

Anonymous said...

My iron level was 2 and hemoglobin 7. Doctor diagnosed me as severe iron deficiency anemia. Funny, I am over 40, was diagnosed in my early 20's, but since then no doctor ever mentioned low iron or hemoglobin and never recommended treatment. I have had 2 iron infusions so far, scheduled for once weekly for 10 weeks. Luckily, no side effects and hemoglobin already increased to 8, so looks like its working. Just make sure to get the test dose, and ask them to run it slower. The nurse told me its suppose to be 15 - 20 minutes, but I insisted on slower infusions since I am sensitive to a lot of drugs and other things. They run it over 40 minutes and I do just fine.

It sounds like such a simple thing, low iron, but it can cause serious effects on lifestyle. I was for a very long time low energy, have to rest after walking a few blocks due to shortness of breath, difficulty with memory and just plain tired all the time. I am glad for these infusions and glad I finally have a doctor who takes it seriously and informs me of all blood tests. Looking forward to feeling more energetic and life improving over a "simple" condition such as poor iron.

I would encourage anyone who needs these infusions to get them, but make sure they do the test dose and dont let them rush you. Even after the test dose, let them know you are apprehensive and ask them to run it slower, like over 30 - 40 minutes instead of 15 - 20 minutes.

Good luck!

Cindy64 said...

I have been searching everywhere on information about iron infussions. Two weeks ago I went in for a iron infussion......I was told that because of the cost the insurance company requires synthetic iron first....well I was settled in and the started with the cocktail of benedryl and steriods I was fine then as soon as the predose started gong in my vein I felt my chest tighten up I told my husband to get me some help then my airway begin to close several people around me started yelling for me some help ,. My husband said I turned red then blue. My body went into convulsions and I had the worst ain you could ever imagine in my lower back and pains shooting straight down my legs. The nurses and my doctor was there and after awhile it all started to ease up. I felt very weak and I just wanted to go home. 3days later I woke up to get ready for work and I could not stand up I had the worst pain in my right hip area. I went to my primary doctor and he put me right into the hospital te did a CAT scan, MRI, x-rays and ultrasound.....to try to rule out internal organ problems. After two days they determined it was musclular and sent me home. The pain took about a week to finally go away. My hemotologist called me and sad I really need you to come back and have the infusion of real iron......I am so scared. I do not want to go through this again. But I need it really bad. I had astri bypass in 2005 and I can't absorb the pill from I am very tried and depressed all the time. I work 52+ hours a week and it's so hard. I just want to stay in bed all the time. I am normally a happy outgoing person but the last 5 years I am withdrawn and lonely. I can't think straight at work and can not afford to lose my job. Can someone please help me.....please I am so scared. I want to feel better but I do not want to die from the iron.

Alyson Wissinger said...

Thanks to you all for sharing your experiences. I was just diagnosed with Celiac Disease recently after a year and a half of severe iron deficient anemia. We now know that is due to malabsorption because of the damage in my small intestine. I'll be going to the doctor on Thursday next week and we'll be discussing IV iron infusions and now I feel better informed. Just curious about the price of the 'real' iron that insurance will not pay for until you've tried the synthetic that seems to cause so many serious issues? Also, is the 'real' iron gluten free? Thanks for any information.

Anonymous said...

I was recently diagnosed with anemia which I have probably had for the last 20 years from heavy menstruation. My ferritin levels were at 7. I had my first infusion of iron dextran last week and no allergic reaction and minimal side effects. I mostly just had extreme fatigue for 24hrs. I also didn't want the entire dose in one sitting so I had them only give me 500mg and I will come back a week later for the remainder of the dose.

Anonymous said...

July 2013
I have this treatment every 3 mos. If I don't my body starts using up by RBC supply and my H/H starts to get critical. I don't want that to start happening because I end up getting blood transfusions and I would rather have the In-Fen (iron) infusions. My day starts at 8AM and I'm usually out by 3PM. They give you bendaryl first and zanex then you get a 10ml dose to see if you will have a reaction. If all is well then they hang the bag. I usually sleep right thru and the nurses keep a really good eye on you. I have been having these treatments for about 2 yrs. I'm fixen to go another route and hope that the problem I have can be fixed and then I want have to have the Iron.

My View said...

Hello everyone,
My Doctor tried to get my Health Insurance to approve Iron IV. And they denied because there is an exclusion in my policy if anything is caused by my gastric-by-pass it is not covered. I can't afford to pay for infusions out of pocket, its thousands, I also have CML Leukemia. Does anyone know of any foundations that would pay for my Iron Infusions? I would be so thankful, I am tired and weak all the time, I don't feel my self. Its horrible and hard to explain.